Podcast Episode 58: Sickle cell disease and leg ulceration - a TVN's experience

Hi, I'm Emmanuel Nonah, Regional Business Manager at CD Medical. Today I'm joined by Juliette Blemon, Tissue Viability Nurse Lead at North East London Foundation Trust, Wolverham Forest, who has very kindly agreed to talk to us today about leg ulceration in people with sickle cell disease. Juliette, thank you very much for taking the time to record this with us today, and before get started could I kindly ask for you to introduce yourself to our listeners. Thank you Manny for having me on this podcast. My name's Juliet and I'm the tissue viability nurse lead for Waltham Forest. I took the long way round into nursing. Firstly I studied as a pupil nurse in college then as an enrolled nurse in the hospital followed by a further training to become a registered nurse. I also studied intensive care nursing and worked there for over 10 years and enjoyed every minute. After the birth of my son with a skin condition I found I had a passion for anything to do with skin, whether the condition of the skin or wounds. So I studied tissue viability courses which I have been now qualified now for over 16 years plus and it's lovely. Thank you very much for sharing your wonderful experience of Australia. It's a pleasure to have you join me today and for the listeners that may have never heard of sickle cell disease, it's a name given for a group of inherited health conditions that affect red blood cells and particularly common in people with an African and Caribbean family background. People with sickle cell disease produce unusually shaped blood cells that can cause problems because the cells don't live as long as healthy blood cells and can block blood vessels. This can prevent normal blood flow of nutrition and oxygen, leading to many complications and in England sickle cell disease affects approximately one in two thousand live births and there are approximately 15,000 people living with sickle cell in the country. Although a very serious and lifelong health condition, treatment can help manage some of the symptoms. So Juliet, we understand that people living with sickle cell can often suffer from episodes of severe pain, a common symptom associated with sickle cell crisis, but another complication that can occur is leg ulceration. Can you describe what may cause a sickle cell related leg ulcer? The cause is complex but it's thought to be related to sickle cell red blood cells. If we say the normal blood red blood cells we'll make that a circle. With someone who suffers from sickle cell they have an odd shape and let's call that a C. Relating to leg ulcers. This affects the lower limb, the medial and the lateral malleolus, which in layman term is the outer and inner ankle. Small breaks to the skin either by trauma or by infection or venous insufficiency due to the decreased blood flow of oxygen. A combination of all these, including pain and mobility, makes it complex. Yes, thank you for your detailed yet simple description. Could you tell me how many patients you've treated with sickle cell ulcers? Since working as a tissue viability nurse, I've seen roughly about 67 patients with this condition and their ages range from 17 to 30. Working in the leg ulcer clinic, the youngest, yes, the youngest was 17 years old and he was in uni or going to uni. I've also got relatives that suffer from sickle cell and it is a debilitating condition and although I don't suffer from sickle cell myself, I can understand what they're going through. Absolutely, absolutely. And could you describe what the healing journey was like for them? Everyone has a different healing journey with sickle cell ulcers or any ulcers in fact. Venous ulcers, without complication, a straightforward ulcer. These patients, their journeys are anything from six to twelve weeks or three to four months. Sickle cell ulcers take longer, up to a year, plus, you know, not all size fits all. Not all ulcers are the same. Everyone's an individual and everyone's different. Yeah, very different journeys that each individual patient will be living through, of course. And I mean, what would you say are the main factors to consider when treating a sickle cell leg ulcer? The patient. The patient is the centre, educating the clinicians and the caregivers, the clients themselves. We have a saying about with venous ulcers or with any ulcers is that, you know, it's not the whole in the patient, it's the whole patient you're looking at. This would incorporate the multidisciplinary teams, gaining trust. I remember a patient, I'm calling him Mr. X. It was winning his trust and his confidence. Enough to trust me with a scalpel is one of the hurdles that you get over. And believing in me, that I knew what I was talking about, so to speak. So when his wounds started to get better, We built up an interpersonal relationship. I knew his mum and it was nice to see that I'd made that much of a difference in his life, you know, his pain management, he was walking better, you know, he agreed with compression therapy, the footwear he was wearing, you know, they like to wear all these fancy trainers but you know that doesn't help sometimes. You know clients want to continue a normal life and that's what his journey was and when they have crisis you know the ulcers usually deteriorate and it's really their well-being you know if they need a blood transfusion they'll you know we work with the multidisciplinary team to make that happen. And what would you say are the main differences in treatment and management in a sickle cell patient with a leg ulcer compared to patients without sickle cell disease? I would like to still say, again, the patients are our priorities, whatever their conditions. With sickle cell, you need to have compassion. They're feeling the pain. It's their ulcer, so to speak. And we try to, I can't imagine what kind of pain that they're going through, but I know it's painful. I've seen Mr. X cry. I've seen him scream. And my priority was, I don't want to see you in pain, hurting, so to speak. So my main priority was sorting out the pain because once you sort out the pain that's the job half done and he'd allow me because of the trust that we built up and the confidence that we had and the interpersonal skills that I had not just with him but with his parents, I was able to make a difference. The outcome, although it took a while, the outcome was that he's actually healed now. Yeah phenomenal, phenomenal and And you mentioned before that it's not just about the hole in the patient, it's about the whole patient. So from a holistic perspective, what could somebody living with sickle cell do to prevent ulceration, Julia? Holistic perspective. Well, once you've built on your interpersonal skills with that client, You can talk about skincare, create a skincare regime, look at exercises that they can do, healthy diet. You know, I suggested lots of vitamins. I suggested the evening primrose capsule, which is good for the skin, zinc, you know. Giving the clients the knowledge that they can self-care, they can look after themselves, what to look out for on their skin. And, you know, it's really the compassion, working with them as a team to get their legs better. I always stick in the six Cs. Oh, that's a phenomenal recommendations there. And it leads me nicely onto my next question, Juliette, which is what have you learned from treating sickle cell leg ulcers that you've taken into treating other lower limb wounds, would you say? building that bond between you and your patient, the trust, using your listening skills, trying new things, thinking outside the box, managing their pain and their journey that they're embarking on in getting that ulcer healed. Yeah, absolutely. Just lastly, I'm a proud member of the Sickle Cell Society. You do amazing job in supporting and representing people affected by sickle cell disorder to improve their quality of life. Juliette, where else would you recommend for people to go for more information on sickle cell disease? I'd suggest any local services, your GP practice, your health centre, any other websites, social media like what we're doing now with this podcast. There's a sickle cell and thalassemia centre in Hackney and we've also got one in Waltham Forest too. Thank you, thank you very, very, very much and thank you for taking the time out to share your wonderful experience with us today, Julia. I greatly appreciate it and for further information on a support for living with sickle cell disease it can be found at legclub.org, sicklescellsociety.org and legsmatter.org. Once again thank you very much Juliet, thanks for your time and for sharing your wonderful experience with us today. Thank you. Thank you.